Dear Scientist, I am a woman who’s lost her hair to alopecia. Can’t you help me grow my hair back?

By Bethany Sales, Video by Sam Crimmins| November 17, 2017

Lisa Gregory can’t just get up and go whenever she’s late to catch the commuter rail for work in the morning. First, she has to draw on her eyebrows, one at a time, using a stencil to make sure one looks just like the other. Then she uses a crayon-tipped liner on the tops and bottoms of each eyelid to hide the fact that she doesn’t have a single eyelash.

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Finally, she places the wig, heavy and hot on her soft scalp, which has been completely bald for 11 years now.

Gregory, who is 46, has alopecia universalis, a condition that causes a total loss of hair across the scalp and body. It’s the more severe form of what’s called alopecia areata, which is when hair is lost in round patches. Patients suffering from alopecia experience symptoms when autoreactive cells attack healthy hair follicles—and it’s more common than people realize.

In the U.S. alone, as many as 6.8 million men and women of all ages and ethnicities are equally affected, with symptoms usually appearing in childhood. Researchers believe a genetic component makes family members more likely to inherit the disease and exhibit symptoms at a younger age.

That was when Gregory first noticed she was different. Growing up, her eyelashes would inexplicably fall out, but they always grew back in. Even when she began to see patches of hair loss on her scalp, the thought of visiting a doctor never came to mind. Her hair grew back.

It wasn’t until Gregory turned 35 and her hair started to thin all over that she realized this was more serious. In just a few short months, she was suddenly and completely bald. She still doesn’t understand why it happened. Then again, neither do her doctors.

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Trial by error

Gregory (left) in 2005, before her hair loss

“It’s a serious immunological disease,” says Elena Peeva, clinical research head for the Inflammation and Immunology Research Unit at Pfizer, leading the charge on what could potentially be the first treatment for alopecia if approved by the FDA. “There are some that still consider it a cosmetic problem. It’s not.”

It’s this stigma, along with the fact that alopecia doesn’t actually shorten a patient’s life span, that’s kept it low on the list of priority diseases for research.

“I thought I’d grow my hair back and I would go back to being ‘normal,’ the way I was before,” says Gregory. “But that never happened.”

For Gregory, hair could no longer be part of her identity as a woman, leading to other identity crises in her life. She became more isolated, only sharing her struggles and insecurities with immediate family members. She stopped going out socially, shied away from coworkers, and went everywhere in her wig, giving her hot scalp a break, wigless and alone in a bathroom stall, whenever it became too much.

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But Gregory isn’t the only woman with alopecia to retreat from relationships and once flourishing careers. As many as 40 percent of women with alopecia report marital difficulties—if they explore romantic relationships at all—and 63 percent claim to have career-related problems.

Last year, Peeva attended a conference for patients with alopecia where she was struck by the true psychological impact of the disease. One slide from a presentation hit her more than any of the others: It featured a suicide hotline.

“I listened to patients describe what it felt like when people suddenly stopped talking to them after their eyelashes and eyebrows fell out,” says Peeva. “They were made to feel different, strange.”

Which is exactly what Gregory was afraid of being seen as. “This is truly the worst thing that’s ever happened to me,” she says. “And no one can figure it out.”

Gregory during an Alopecia Awareness Month event at Fenway Park

It’s been 11 years, but Gregory still doesn’t understand why doctors can’t get her hair to grow back in without falling back out. She’ll read about breakthroughs in complicated transplants and doctors that 3D print organs and think, “But can’t you make my hair grow back?”

Her story, her words

“Dear Scientist,” writes Gregory.

I had high hopes in the beginning when my hair grew back. I could get back to my life. I could get rid of the wig, the pills, the creams. I figured once my hair grew back I could re-live my life, like a do-over.

But then it started to fall out again. This has happened to me more than once, and it’s just as devastating the third and fourth time.

Peeva reads Gregory’s letter in a bright room at Pfizer’s research facility in Kendall Square. Peeva has come to grasp just how difficult alopecia can be since she started working directly with patients throughout her clinical trial research, which was recently granted an extension to see how patients respond to the investigational treatment over time. Even still, reading Gregory’s letter impacts her.

When Lisa Gregory walks into the room to meet Peeva for the first time, she’s shy, tentative to talk so openly about something so personal. Knowing Peeva is no ordinary stranger, but a scientist who is working to make her life better, puts her at ease.

She tells Peeva how she went from talking to no one, to joining a support group, and then coming to lead that support group. And then they get to talking about what many in the group are still looking for: more options.

“I don’t have to do treatments. I’m fine, I’m healthy,” says Gregory. “But it’s the emotional aspect of losing something I once had that makes me try—and hope beyond hope.”